by Melissa London
   NW Asian Weekly  February 28 - March 6, 1998, Volume 17, Number 9
 

For an 8-month-old baby girl who suffers from cerebral palsy and lives in China, the path of a normal childhood and may be found in a Seattle.  Her parents, who live in Xian, Shaanxi, have found a Seattle medical specialist who they say can help in ways that doctors in their native country cannot.

The problem is getting here.

Ma Shixun, a traffic expert for an import-export company, and his wife Zhang Hongbo, a motorcycle salesperson, say they simply cannot afford the trip.  For travel alone, they estimate coming to America will cost about four times the family's annual income of $1500 U.S.

Father Ma Shixun says he has "traveled all over China to find ways" to cure his child, Ma Yinan, whose central nervous system was damaged during childbirth.  Doctors there told him the condition was caused by a half an hour asphyxia during birth; Ma Shixun blames the hospital.

Although he has spent months searching for a solution, the baby's father didn't find one until recently.  And it wasn't in China.

"Always I got disappointing answers since China did not pay much attention to the disease until recently," Shixun explained.  "Chinese doctors told me that the baby will be severely affected with her activities, as well as her intelligence.  She will not be able to study and take care of herself when grown up."

He added that some doctors even encouraged the couple to give up the child.   "But how can we after 10 months of her mother's pregnancy?" he said.  "How can we give up when the baby smiles and murmurs to you from time to time?"  How can we give up with all the expectations of her grandmas and grandpas?"

As a last resort, the parents turned to the internet for help.  There they met Judith Bluestone, founder and clinical/educational director of the Seattle-based HANDLE Institute.  A private consultant rather than a medical doctor, Bluestone has long been involved in helping brain-damaged patients learn to laugh, play, walk  and do all the things that normal children do.

Though they've never met in person, Shixun describes Bluestone as "a very kind and patient lady (who) offered to provide us medical help.  "After viewing ... my baby's behavior on the net, she assured me she is confident that she can improve my baby's condition by amalgamating her skills with another kind of treatment which, though I do not quite understand, is different from Chinese treatment methods."

Already, through e-mail correspondence, the parents have been able to help Ma Yinan, and she has shown marked improvement.  "She can smile to us and respond to our voices and is even truing to roll over," Ma Shixun said recently.  "It is really wonderful to know there is someone concerned with a baby tens of thousands of miles away."

Bluestone, who used to work for King County Public Hospitals, is one of the only neuro-developmental educational therapists around who deals specifically with neurological disorders.  She's worked with brain injuries for more than 30 years.

Although she's still working on her Ph.D., she's not yet a doctor of any sort.  And her methods are somewhat different than the traditional cures for CP, which include medication for controlling seizures, surgery for correcting physical problems, counseling, mechanical aides and various forms of therapy.

Cerebral palsy is a type of brain damage that usually occurs at birth and causes irregular abilities in coordination and muscle tone.  Those who suffer from it, for example, might be seen flailing around.  It is not fatal, but problems associated with the condition  such as abuse or inability to cope with daily tasks - can lead to death.

Rather than advocating traditional methods, Bluestone explained, through "continued education and working with other professionals, I have developed my own method of identifying the rood cause of things going on between the brain and the body."

As a result, she has developed an "individual program that is very holistic in nature - with special massage, nutrition advice and environmental considerations, such as color and lighting."  She says her technique has had major effects on young children, especially those born prematurely.  "I've had some people who have gone to 37 specialists.  They've been seen by me and it's only now that we know what's going on," she said.

Her baby is the HANDLE Institute, a nonprofit group started in October of 1994.  It's based on an approach which Bluestone crafted and advocates,  called "HANDLE," an acronym for Holistic Approach to Neural-Development and Learning Efficiency.

Although it's a local organization, most Seattleites probably have not heard of the institute or the technique.  So far, the institute primarily operates on "word of mouth," Bluestone explained.   But HANDLE is in the process of expanding, and recently opened new clinics in Texas and Alaska.

As far as Ma Yinan is concerned, Bluestone said," I just want to hold that baby.  We're really invested in this little gal."  She explained that Chinese doctors were not necessarily wrong in the care they've prescribed, but, "sometimes, they are just missing the basic things going on."

Working with children from other countries is not new to the HANDLE Institute.  But a long-distance relationship means that the institute can help only in some ways.  This baby's problem is so severe" that she should be seen, Bluestone said of Ma Yinan.

For example, when the child was born last June, she had no muscle tone at all.  Because of that, her weight was low and she had difficulty breathing.  The point now, Bluestone said, is to help that little girl recover and lead a normal life, to the greatest extent possible.  Cerebral palsy is not progressive, but it cannot be cured either.  The goal is to learn to live successfully.  "We can't go back and undo it," Bluestone said.  "The thing to do is deal with now."

Help in Seattle

Although the baby is better, Bluestone says there is much more to accomplish in the long-term.  And that is only possible if the family comes to Seattle.  "in order to help her become actually functional, to be able to sit up, and walk and talk and those type of things, they are going to need more help," Bluestone said.

At first, Ma Yinan couldn't even hold her head up, she had difficulty making sounds and had no grip.  She also had trouble sleeping.  The parents were worried because the child was eating less and less, Bluestone said.   As of early last month, however, under Bluestone's long-distance care, the baby had already started to make some improvements.  For example, the parents tried a technique called "face tapping," which stimulates [the area served by the trigeminal nerve] but is not stressful on the child's weakened system.

To create a program that works best for this baby, Bluestone said, "there are things we are going to need to check out with her (in person).  "We can get her to stay alive and be minimally functional (in China), but if we want to do more that that, we really need to see her."

To help, Ma Shixun, Zhang Hongbo and Ma Yinan can be reached by writing: Chinese Baby, c/o Northwest Asian Weekly, 414 - 8th Ave. S., Seattle, WA 98104.  In addition, a video of the Ma Yinan is on the web at http://stuweb.ee.mtu.edu/~chili/baby, or the family cam be reached via e-mail at: mashixun@pub.xa-online.sn.cn.

The HANDLE Institute is in Seattle, at (206) 285-5498. Or visit the group on-line at www.handle.org.